In November 2015, amid building controversy over proposals for "editing" the human germline, the Center for Genetics and Society organized this sign-on letter calling for strengthened prohibitions against using genetically engineered human embryos or gametes for reproduction.
Initiating signatories were invited via email. The letter will remain open to additional sign-ons until December 31, 2015. To add your name, or to comment, please email germlineletter@geneticsandsociety.org.
All organizational affiliations are shown for identification purposes only.
Open Letter on Reproductive Human Germline Modification
Organized by Center for Genetics and
Society, November 2015
Recent developments in gene editing have generated
worldwide attention. Like so many powerful new technologies, gene editing holds
potential for both great benefit and great harm.
Those signing this letter represent a broad spectrum of
scholars, scientists, health practitioners, public interest advocates, and
others, with a wide range of opinions on many questions involving the uses of
gene editing. All of us agree, however, about one of its potential
applications: We must not engineer the genes we pass on to our descendants.
The implementation of heritable human genetic
modification – often referred to as the creation of “genetically modified humans”
or “designer babies” – could irrevocably alter the nature of the human species
and society.
Gene editing may hold some promise for somatic gene therapy
(aimed at treating impaired tissues in a fully formed person). However, there is no medical
justification for modifying human embryos or gametes in an effort to alter the
genes of a future child. Parents who wish to have children unaffected by
genetic diseases can almost always accomplish this through other methods,
including conventional embryo screening and selection procedures. While
screening future children also raises significant ethical implications, it is
far safer than experimentally manipulating the DNA of germ cells to produce
genetically modified babies, and has less potential for widespread societal
disruption.
Experiments with human germline intervention could lead
to miscarriage, maternal injury, and stillbirth. Genetically modified children
who seem healthy at birth could develop serious problems later in life, some
perhaps introduced by purported enhancements. Other harmful consequences of
germline modification might only present themselves in subsequent generations.
Such outcomes would represent individual tragedies; they could also trigger
social backlash against beneficial uses of genetic technologies.
Some suggest that germline modification be allowed for
therapeutic purposes but not for “enhancement.” But the distinction
between these applications is subjective and would be difficult or impossible
to implement as policy. Permitting germline intervention for any intended
purpose would open the door to an era of high-tech consumer
eugenics in which affluent parents seek to choose socially preferred qualities
for their children. At a time when economic inequality is surging
worldwide, heritable genetic modification could inscribe new forms of
inequality and discrimination onto the human genome.
For these reasons, several dozen countries, including
most of those with highly developed biotechnology sectors, have explicitly
banned human germline modification. The Council of Europe’s binding 1997
Convention on Human Rights and Biomedicine also prohibits it. Numerous opinion
surveys show that the great majority of Americans and others worldwide believe
that heritable genetic modification should be prohibited.
While we are encouraged by efforts on the part of
scientific bodies to move the process of deliberation about acceptable uses of
gene editing forward, we are concerned that much of the focus has been on
technical issues of safety (implying that if it were safe it would be
acceptable), rather than on broader ethical and social implications. We
strongly believe that the National Academies’ initiative and international
meeting should be considered a very early step of a broadly inclusive program
of public discussion. Any recommendations emerging from the meeting or the
initiative should make this clear.
In sum, there is no justification for, and many arguments
against, human germline modification for reproductive purposes. We call for a
prohibition on such germline modification and a robust and broadly inclusive
discussion on the socially responsible uses of this and other emerging genetic
technologies.
Sincerely,
[An asterisk indicates an institutional endorsement; organizational affiliations are otherwise shown for identification purposes only.]
Initiating Signatories
- Jill E. Adams, JD, Executive Director, Center on
Reproductive Rights and Justice, UC Berkeley School of Law
- Enola Aird, Founder, Mothers for a Human Future
- Rodolfo John Alaniz, PhD, University of California, Berkeley
- Dr. Michael Antoniou, Head, Gene Expression and Therapy Group,
King's College London; Faculty of Life Sciences and Medicine Department of
Medical and Molecular Genetics, Guy's Hospital, London
- Tom Athanasiou, Director, Ecoquity.org
- Dr. Patricia A. Baird, University Killam Distinguished Professor
Emerita, University of British Columbia, Canada
- Carlos Andrés Barragán, University of California, Davis
- Diane Beeson, PhD, Alliance for Humane Biotechnology
- Emily Beitiks, PhD, Associate Director, Paul K. Longmore
Institute on Disability, San Francisco State University
- Ruha Benjamin, Department of African American Studies,
Princeton University
- Rajani Bhatia, Assistant Professor, Department of Women's, Gender, and Sexuality Studies, SUNY at Albany
- Catherine Bliss, Assistant Professor of Sociology, University
of California, San Francisco
- Deborah Bolnick, PhD, Associate Professor, Department of
Anthropology, University of Texas at Austin
- Catherine Bourgain, Researcher in Human Genetics, INSERM (French National Institute for Health and Medical Research); Fondation Sciences Citoyennes
- * Deborah Burger, California Nurses Association/National
Nurses United
- Beth Elpern Burrows, (retired) President-Director, The Edmonds
Institute
- Dr. Katayoun Chamany, Associate Professor of Biology, Eugene Lang College
for Liberal Arts, The New School
- Claudia Chaufan, Associate Professor of Sociology and Health
Policy, University of California San Francisco
- Jonathan Chernoguz, Center for Genetics and Society
- Adele E. Clarke, PhD, Sociology, University of California, San
Francisco
- Francine Coeytaux, Pro-Choice Alliance for Responsible Research
- Zenei Cortez, California Nurses Association/National
Nurses United
- Eugene P. Coyle, PhD, Public Interest Advocate
- Jessica Cussins, Master's candidate, Harvard Kennedy School of
Government
- Alex Dajkovic, Micalis, INRA, France
- Gwen D'Arcangelis, Assistant Professor, scholar of gender, race,
and science studies, California State Polytechnic University, Pomona,
California
- Marsha J. Tyson Darling, PhD, Professor of History &
Interdisciplinary Studies; Director, Center for African, Black & Caribbean
Studies Programs, Adelphi University, Garden City, New York
- Marcy Darnovsky, PhD, Executive Director, Center for Genetics
and Society, Berkeley, California
- Miranda Davies, Journal Managing Editor,
CoramBAAF, London
- Prof. Lennard Davis, Distinguished Professor of Arts and Sciences,
University of Illinois at Chicago
- Shamita Das Dasgupta, PhD, Cofounder, Manavi, New Jersey
- Eniko Demény, Junior Researcher, Center for Ethics and Law
in Biomedicine, Budapest, Hungary
- Kathy Dennis, California Nurses Association/National
Nurses United
- Christina L. Desser
- Giovanna Di Chiro, PhD, Swarthmore College
- James M. Diamond, M.D., FAAP
- Prof. Donna Dickenson, Emeritus Professor of Medical Ethics and
Humanities, University of London
- Pierre Divenyi, PhD, Consulting Professor, Stanford
University
- Kathy Souza Donohue, RN, California Nurses Association/National
Nurses United
- Ole Döring, Professor of Sinology, Department of History
and Cultural Studies, The Free University of Berlin
- Mark Dowie, Writer
- Elaine Draper, PhD, JD, Professor of Sociology and Director of Law and Society Program, California State University, Los Angeles
- Justine Durrell, Durrell Law
- Jerzy Eisenberg-Guyot, University of Washington
- Carl Elliott, Professor, Center for Bioethics, University
of Minnesota
- Bunny Engledorf, California Nurses Association/National
Nurses United
- Steven Epstein, Professor of
Sociology, Northwestern University
- George Estreich, Author
- Jonathan Ewbank, Research Director, INSERM (French National
Institute for Medical Research)
- Hedva Eyal, Isha L'Isha, Haifa Feminist Center
- Connie Field, Filmmaker
- Anne Finger, Writer
- Michael J. Flower, Professor of Interdisciplinary Science Studies,
Emeritus, University Studies Portland State University, Portland, Oregon
- Susan Berke Fogel, JD, Pro-Choice Alliance for Responsible
Research
- Marlene Gerber Fried, Professor of Philosophy, Hampshire College
- Alexander Gaguine, President, Appleton Foundation
- Dr. Adam Garfinkle, Editor, The American Interest
- Rosemarie
Garland-Thomson, Professor of
English; Co-Director, Disability Studies Initiative, Emory University, Atlanta,
Georgia
- Charles Garzon, Director of Finance and Administration,
Center for Genetics and Society
- * Genetic Support Foundation
- Dr. Sabu Mathew George, Centre for Women's Development Studies, New
Delhi
- Daniel Gibbs, PhD, Assistant Professor, Department of Neurosciences, Gibbs Lab for CNS Gene Delivery and Therapy,
Center for Neural Repair,
Translational Neurosciences Institute, University of California, San Diego
- Scott Gilbert, Howard A. Schneiderman Professor of Biology
(emeritus), Swarthmore College
- Cokie Giles, California Nurses Association/National
Nurses United
- Mickey Gjerris, Asscoiate Professor in Boethics, PhD,
University of Copenhagen; Member of the Ethical Council of Denmark
- Marilyn Golden, Senior Policy Analyst, Disability Rights
Education & Defense Fund
- Alan Goodman, Hampshire College
- Gene Grabiner, SUNY Distinguished Service Professor Emeritus
- Rosann Greenspan, PhD, Center for the Study of Law and Society
- Jeremy Gruber, Former President, Council for Responsible
Genetics
- David H. Guston, Professor and Founding Director, School for
the Future of Innovation in Society, Arizona State University
- Barbara Haber, Psychotherapist
- Dr. Hille Haker, Richard McCormick Endowed Chair in Ethics,
Loyola University, Chicago, Illinois
- Linda Hamilton, California Nurses Association/National
Nurses United
- Charles Halpern, Emeritus Member, National Academy of Medicine
- Jaydee Hanson, Policy Director, International Center for Technology Assessment
- Donna Haraway, Distinguished Professor Emerita, History of
Consciousness Dept., University of California at Santa Cruz, Santa Cruz,
California
- J. P. Harpignies, Author, Editor, Environmental Activist
- Dr. Betsy Hartmann, Professor Emerita, Development Studies,
Senior Policy Analyst, Population and Development Program, Hampshire College
- Richard Hayes, PhD, founding and former Executive Director,
Center for Genetics and Society
- Martha R. Herbert, PhD, MD, Neurology, Harvard Medical School
- Karen Higgins, California Nurses Association/National
Nurses United
- Daniel Martinez HoSang, Associate Professor of Political Science and
Ethnic Studies, University of Oregon
- Elliot Hosman, JD, Senior Program Associate, Center for
Genetics and Society
- Emilia Ianeva, JD, PhD, California State University East
Bay; Alliance for Humane Biotechnology
- Lisa Ikemoto, Martin Luther King, Jr. Professor, University
of California-Davis School of Law
- Jonathan Xavier Inda, Professor and Chair, Department of
Latina/Latino Studies, University of Illinois, Urbana-Champaign
- Michael Jackson, California Nurses Association/National
Nurses United
- Burt Jacobson, Founding Rabbi, Kehilla Community Synagogue
- Bruce Jennings, Director of Bioethics, Center for Humans and
Nature
- Sujatha Jesudason, PhD, former Executive Director, Generations
Ahead
- Jonathan Kahn, Professor, Hamline
University School of Law
- Jo Ellen Green Kaiser, Executive Director, The Media Consortium
- Margie Keenan, California Nurses Association/National
Nurses United
- Catherine Kennedy, California Nurses Association/National
Nurses United
- Andrew Kimbrell, Executive Director, International Center for Technology Assessment
- David King, PhD, Human Genetics Alert, London
- David Koepsell, Comision Nacional de Bioetica, Mexico
- Dr. Suhas Kolhekar, Molecular Virologist and Health Activist, Jan
Swasthya Abhiyan / People's Health Movement, India
- Regine Kollek, PhD, Professor of Biomedical Technology
Assessment; Director of the Research Centre for Biotechnology, Society and the
Environment, University of Hamburg
- Nancy Krieger, PhD, Professor of Social Epidemiology, Department
of Social and Behavioral Sciences, Harvard T.H. Chan School of Public Health,
Harvard University
- Catherine Kudlick, PhD, Professor of History and Director, Paul K. Longmore Institute on Disability, San Francisco State University
- Martha Kuhl, California Nurses Association/National
Nurses United
- * Matthew Legge, Canadian Friends Service Committee (Quakers)
- Trudo Lemmens, LicJur, LLM (bioethics), DCL, Professor and
Scholl Chair in Health Law and Policy, Faculty of Law, Dalla Lana School of
Public Health, and Joint Centre for Bioethics, University of Toronto
- Rabbi Michael Lerner, Editor, Tikkun Magazine
- Judith Levine, Writer
- Susan Lindee, Janice and Julian Bers Professor of the
History and Sociology of Science, University of Pennsylvania
- Heidi Lindh, MS, LCGC, Genetic Support Foundation
- Abby Lippman, PhD, Professor Emerita, McGill University
(Montréal, Québec)
- Margaret F. Lynch, PhD, San Francisco State University
- Dr. Calum MacKellar, Director of Research, Scottish Council on
Human Bioethics
- John Maguire, University of Pittsburgh
- Laura Mamo, Professor, Health Equity Institute, San
Francisco State University
- Becky Mansfield, Professor of Geography, Ohio State University
- Gina Maranto, Director, Ecosystem Science and Policy,
University of Miami
- Charles Margulis, Center for Environmental Health
- Malinda Markowitz, California Nurses Association/National
Nurses United
- Mary Ann Mason, Professor of the Graduate School, University
of California, Berkeley
- Michelle McGowan, PhD, Associate Professor of Women's, Gender,
and Sexuality Studies; Associate Professor of Bioethics, The
Pennsylvania State University
- Bill McKibben, Author
- Philip McManus, President, IF: People Seeking Possibilities;
Board, Appleton Foundation
- Everett Mendelsohn, Professor of the History of Science,
Emeritus, Harvard University
- Anuradha Mittal, Executive Director of The Oakland Institute
- Shree Mulay, Professor, Faculty of Medicine, Memorial
University, Newfoundland, Canada
- Ari Ne'eman, President, Autistic Self Advocacy Network;
Former Member, National Council on Disability
- Stuart A. Newman, PhD, Professor of Cell Biology and Anatomy,
New York Medical College
- Richard Norgaard, Professor Emeritus of Energy and Resources,
University of California, Berkeley
- Judy Norsigian, Founder and former Executive Director, Our
Bodies Ourselves
- Aaron Panofsky, Associate Professor, Institute for Society and Genetics, Public Policy, and Sociology; ISG Vice Chair for Undergraduate Education, University of California, Los Angeles
- Brendan Parent, JD, Director of Applied Bioethics, New York
University School of Professional Studies
- * Erich Pica, President, Friends of the Earth - U.S.
- Beth Piknick, California Nurses Association/National
Nurses United
- Tony Platt, Center for the Study of Law & Society,
University of California, Berkeley
- Robert Pollack, PhD, Professor of Biological Sciences,
Columbia University
- Carl Pope, Environmental consultant
- Joan Rachlin, JD, MPH, Board Chair, Our Bodies Ourselves
- Dr. Mohan Rao, MBBS, PhD, Professor, Centre of Social
Medicine and Community Health, School of Social Sciences, Jawaharlal Nehru
University, New Delhi
- Christoph Rehmann-Sutter, Professor of Theory and Ethics in the
Biosciences, University of Lübeck, Germany
- Milton Reynolds, Board Chair, Literacy for Environmental
Justice
- Dorothy Roberts, JD, George A. Weiss University Professor of
Law and Sociology and the Raymond Pace and Sadie Tanner Mossell Alexander
Professor of Civil Rights, University of Pennsylvania
- Janette Robinson Flint, Executive Director, Black Women for Wellness
- Kathy Roemer, California Nurses Association/National
Nurses United
- Christine Rosen, Senior Editor, The New Atlantis: A Journal of
Technology & Society; Future Tense Fellow, New America
- Jean Ross, California Nurses Association/National
Nurses United
- Loretta Ross, Five Colleges Women's Studies Research Center
- Anne Rumberger, Marketing Manager, Verso Books
- Jane C. Sandoval, RN, California Nurses Association/National
Nurses United
- Marsha Saxton, PhD, Director of Research, World Institute on
Disability
- Gerald S. Schatz, JD of the Bars of Pennsylvania and the
District of Columbia
- Prof. Dr. Silke
Schicktanz, University Medical
Center, Department for Medical Ethics and History of Medicine, Göttingen,
Germany
- Prof. Dr. Ingrid Schneider, Universitaet Hamburg, Centre for
Biotechnology, Society and the Environment - Medicine/Neuronal Sciences
- Susan Schweik, Professor of English, University of
California, Berkeley
- Peter Selman, Visiting Fellow, School of Geography,
Politics & Sociology, Newcastle University, UK
- Dr. Carmel Shalev, Department for Reproduction and Society,
International Center for Health, Law and Ethics, Israel
- Pete Shanks, Author; Consulting Researcher, Center for
Genetics and Society
- Stephen Shmanske, Emeritus Professor of Economics, California
State University, East Bay
- Evelyne Shuster, PhD Medical Ethics; Advisory Board Member,
Global Lawyers and Physicians
- John M. Simpson, Privacy Project Director,
Consumer Watchdog
- Jeffrey M. Skopek, Lecturer in Medical Law, Ethics and Policy,
Faculty of Law, University of Cambridge
- Prof. Robert Song, Professor of Theological Ethics, Department of Theology and Religion, Durham University
- Alexandra Minna Stern, University of Michigan
- Tina Stevens, PhD, Director, Alliance for Humane
Biotechnology
- Katie Stoll, MS, LCGC, Genetic Support Foundation
- Alan Stoskopf, University of Massachusetts, Boston
- Shirley Sun, Associate Professor of Sociology, Nanyang
Technological University, Singapore
- Elly Teman, PhD, Ruppin Academic Center, Israel
- Charis Thompson, University of California
Berkeley, London School of Economics
- Sheila R. Tully, PhD, Department of Anthropology, San Francisco State University
- Leif Wellington Haase, LWH Consulting
- Gabriele Werner-Felmayer, PhD, associate professor, Division of Biological Chemistry, Biocenter and Bioethics Network Ethucation, Medical University of Innsbruck, Innsbruck, Austria
- Sally Whelan, Co-founder, Our Bodies Ourselves
- Peter Whitehouse, Professor of Neurology and current Professor of Psychiatry, Neuroscience, Psychology, Cognitive Science, Bioethics, Nursing, History, and Organizational Behavior, Case Western Reserve University; Strategic Advisor in Innovation and Visiting Scholar, Baycrest and Professor of Medicine and Institute of Life Course and Aging, University of Toronto; President, Intergenerational Schools International
- Stacey Wickware, Social Science & Medical Ethics Educator
- Donna Kelly Williams, California Nurses Association/National
Nurses United
- Patricia Williams, James L. Dohr Professor of Law, Columbia
University School of Law
- France Winddance Twine, Professor of Sociology, University of
California, Santa Barbara; Research Justice Scholar, Mills College, Oakland
- David Winickoff, Associate Professor of Bioethics, University
of California, Berkeley
- Lee Worden, University of California, San Francisco
- Susan Wright, Professional Researcher, History of Science,
Department of Politics, University of California, Santa Cruz
- Jane Yett, Consultant
- Gregg Pascal Zachary, Arizona State University, School for the
Future of Innovation in Society
- Barry Zuckerman, PhD, President, Adax, Inc.
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